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Hospice UK Conference 2016: Day One Round-up

Author: Suzanne Stevenson
17 November 2016

The “seven ages of hospice care” and the intriguing relationship between dying, death and modern architecture were among the topics explored during the first day of Hospice UK’s conference 2016.

Professor David Clark, of the School of Interdisciplinary Studies, University of Glasgow, Visiting Professor at the University of Navarra, Spain and a Vice President of Hospice UK, gave the first plenary after  the conference was officially opened by Lord Howard,  Chair of Hospice UK.

His presentation was based on his book “To Comfort Always: a history of palliative care since the nineteenth century”.

While the modern hospice movement is set to celebrate its fiftieth anniversary next year, Professor Clark provided a fascinating glimpse at the longer history of hospice care.

He spoke of the “seven ages” of hospice care under the themes of Awakening, Charism, Indifference, Uncertainty, Formation, Recognition and Challenges.

He began by highlighting the role of physicians in the nineteenth century and how, as well as providing clinical care they were expected to provide reassurance and help assuage patients’ fears. He quoted from the thesis of Edinburgh medical student Hugh Noble: “When hope of recovery has passed the physician must recognise that more may be done.” He mentioned how this resonated later with hospice movement founder Cicely Saunders.

He explored the foundations of the modern hospice movement which was led by women and largely religiously inspired. He spoke of how hospices such as Royal Trinity Hospice in Clapham – which began as the Hostel of God- and St Joseph’s in east London had made the transition from these origins into the modern era of palliative care.

The development of palliative care during the twentieth century was also covered by Professor Clark who touched on aspects such as the increasing medicalisation of death, Cicely Saunders’ concept of “total pain” in developing holistic care and the gradual development of hospice care becoming recognised as a specialism.

This later led to new approaches to clinical practice and an increasing  focus on the need for better education  and training for doctors caring for the dying.  Professor Clark gave an example of one GP working in the Highlands in the 1950s who experienced “utter helplessness” at his lack of skills in palliative care and how he didn’t know where to turn for guidance.

He later highlighted the 56million deaths each year globally and the projected increases in these to 91 million by 2050, driven by more people living for longer with long-term health conditions. Professor Clark questioned how death and dying on this scale would be supported, at what point the world would reach “peak dying” and the place of hospices in all of this, saying they were “often the elephant in the room”.

He ended with a memorable example of a literal elephant which he said captured the attention to detail which is characteristic of hospice care. Several years ago , Highland Hospice was providing care for a woman who loved elephants. They had heard that a circus was in town and arranged for the elephant to come to the hospice and visit her.

“While there are challenges and complexity involved in providing palliative and hospice care, it is always important to be reminded that our interactions, however formulated,  can make a big difference to patients’ lives and are within our grasp, if we have the imagination and will to reach for it,” said Professor Clark.

During the second plenary in the afternoon Alison Killing, a leading architect and urban designer, spoke of her experiences working on “Death in Venice” for the Venice Biennale in 2014 where she created a series of installations, including a giant map of London featuring places linked to death and dying in the capital.

As part of this she also looked at social changes over the last 100 years and “the different spaces that people moved through linked to death and dying”. She noted how in the early part of the twentieth century there was little variation in death and dying for most people, usually centred around people’s homes, then churches and graveyards but that in later decades this changed, with more people dying in hospitals and hospices and different spaces connected with death, for example cremation which gradually became more widespread.

Death was generally understudied in architecture, she said, but despite this there was greater regard for death than dying, with more focus on  “the architecture of memorial”, for example through  mausoleums.

Modern architecture Alison said had struggled with the rituals around cremation, singling out the example of the first crematorium built in Woking with a prominent chimney that was very industrial- looking in design, noting that later a chapel was built alongside it “to provide space for the rituals we expect after death.”

She later highlighted how running costs for hospitals and the amount of machinery involved were key drivers in hospital design but that hospices – built on a smaller scale - were a counterpoint to this and had more freedom to experiment.  

She praised the Maggie’s Centres for people with cancer for their innovative design and how they created a sense of ownership among patients, enabling them to easily make small changes to control changes to their environment such as temperature or the amount of daylight. This had been found to improve their overall quality of life and increase positive perceptions about the care they received.

She said the personalised, homely environment of hospices - which were often set in scenic gardens - created a real opportunity for hospices to design physical environments that were beneficial for both patients and staff.  

“There is an irony in that designing buildings for people who are dying, or to have a good death, that hospices are designing for wellness,” she said, saying that many other care providers could learn from hospices about what good healthcare environments should be.

               

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